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Babies With Three Parents: Is This A Green Light For The End Of Disability?

June 28, 2013

There’s something very scary on the front page of today’s Guardian. They report that the UK government has backed a new IVF technique that uses DNA from three people.

This means that babies could have three biological parents- one father and two mothers. It sounds like the stuff of science fiction.

The technique, known as mitochondrial transfer, would allow doctors to prevent major childhood diseases- and genetic physical disabilities such as muscular dystrophy. These are passed on through the genes of a mother.

It was pioneered in Britain at Newcastle University, and targets conditions known as mitochondrial disorders. These affect parts of the body that need the most energy, including the brain and muscles.

The move was announced in London yesterday by Dame Sally Davies, the chief medical officer for England. She called the procedure a ‘life saving treatment.’

A consultation by the Human Fertilisation and Embryology Authority published in March suggested the public was generally supportive of the technology. Draft regulations are expected to be ready this autumn.

If MPs approve regulations due to be debated in parliament next year, Britain would be the first country to offer the radical treatment. Doctors would be able to apply for permission to offer the procedure on the NHS before the end of 2014.

The procedure makes genetic modifications to an embryo that will pass down to all future generations. So there could be unforeseen complications much later for any babies born in this way. Also, although the technique has been shown to work in animals, it has never been tested in humans so far.

These are serious concerns which must be carefully considered before this idea goes any further. However, neither of these are the main reason why the idea worries me.

This idea raises many serious ethical issues. As a person disabled since birth, the ethical issues that most concern me relate to disability, disabled people and the value of our lives.

My personal belief has always been that every life is equally valuable. However, what does the idea of eliminating genetic disabilities suggest about the value of the lives of people who already have these conditions? What does it suggest about the value of the lives of people who are born disabled whose conditions are not genetic? About the value of the lives of those who become disabled later in life due to an accident?

Are our lives worth so little that potential parents should be encouraged to consider doing something so drastic, so unnatural, to eliminate the possibility of having a child like us?

Parenthood takes much more than biology, but there’s no doubt that biology is very important. Don’t women with faulty mitochondria deserve the joy of having their own, biological children? Or is there a suggestion that they can somehow help having this fault in their DNA? Surely they can’t- any more than disabled people can help being disabled.

The idea of the procedure being available on the NHS- to anyone, for free, is something that I find particularly worrying.

By giving a green light to the possibility of this procedure, has the Government also given a green light to the start of a world without people born with disabilities? Are we, today, one step closer to such a world?

What does that say about how people like me, who are born disabled, are seen by the mainstream world we live in today, where this procedure is not yet available?

A final, even more worrying thought. In a world where no one is born with a disability, how will those who become disabled later in life be treated?

The idea of babies having three parents will sound, to most, like it has come from another planet. It has certainly given me thoughts that have left me shivering with fear.

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8 Comments leave one →
  1. Dave permalink
    June 28, 2013 9:48 am

    Wax lyrical all you want, if there is a chance to decrease the amount of people who are born disabled this is a good thing. Your arguments are selfish. I don’t care about you enough to have disabled children so that you can feel better about your self.

  2. June 28, 2013 11:17 am

    “Don’t women with faulty mitochondria deserve the joy of having their own, biological children?”

    From the BBC website today:

    “Sharon Bernardi’s son Edward died last year aged 21. He had Leigh’s disease, a rare progressive mitochondrial disorder that affects the central nervous system. He needed constant care through his life. All her other children died within days of birth as a result of the inherited condition.

    Sharon, from Sunderland, said: “Losing one child is bad enough but I lost six babies to mitochondrial disease. Edward suffered a lot towards the end of his life and was in terrible pain. I hope other couples will be allowed to have this new treatment and be spared what my husband and I went through.””

    Maybe you can make an argument that Edward, and those six other unnamed children, had a right to be born mitochondrial disorders and all. But to try and make this about the ‘joy’ experienced by mothers when they pass on these conditions to their biological children is grotesque.

    This technique will make it easier, not harder, for mothers with faulty mitochondria to experience the joy of having their own biological children. Without it, the options might come down to adoption or egg donation vs. one dead baby after another.

    “Are our lives worth so little that potential parents should be encouraged to consider doing something so drastic, so unnatural, to eliminate the possibility of having a child like us?”

    It’s precisely because every human life is so valuable that we should be heartbroken to think of any life being cut so desperately short. If we have a chance to prevent a condition that might otherwise kill these children days after birth, by replacing faulty mitochondria with healthy mitochondria at the earliest stage of development, we should take it.

  3. samedifference1 permalink*
    June 28, 2013 12:34 pm

    GO- so if a child has two biological mothers, which one is ‘real?’ The one with the fault or the one without?

    Isn’t there any small chance that women with this genetic fault can naturally have a non-disabled child? Don’t they, like everyone else, deserve the joy that might come if they take that chance and their child is born without a disability?

    • June 28, 2013 2:40 pm

      The woman with the fault is the ‘real’ mother. The 37 genes contained in the donor’s mitochondria account for just 0.2% of the total passed on to the child, and don’t have anything to do with the child’s appearance etc.

      Probably there is a chance that these women can naturally have a non-disabled child, yes.

      As for this question:

      “Don’t they, like everyone else, deserve the joy that might come if they take that chance and their child is born without a disability?”

      – I’m not quite sure what to make of it. Your implication seems to be that the joy of having a non-disabled child born as a result of using this technique is somehow lesser than the joy of having a non-disabled child born *without* using this technique – either because the latter is more ‘natural’, or because there’s extra joy to be had from knowing you beat the odds, or a bit of both – and so this technique deprives women of the chance to experience the greatest possible joy from having their child.

      Even if that’s right, though, surely most women would be more than happy to trade a slim chance of a maximally joyful outcome (a healthy, naturally-conceived baby) plus a high risk of a maximally painful outcome (a dead baby), for the near certainty of a still-pretty-joyful outcome (a healthy baby conceived using this technique)?

      And anyone who *didn’t* want to make that trade wouldn’t have to anyway. Nobody’s proposing to stop people conceiving naturally.

      The implication of your argument is that lots of dead babies and grieving mothers are ultimately ‘a price worth paying’ for the occasional beat-the-odds story in which a woman gets the ‘joy she deserves’. That is pretty uncomfortable, to say the least. I’d much rather trade all the dead babies, grieving mothers and beat-the-odds stories for a situation in which donated mitochondria are routinely used to prevent these conditions occurring in the children of women whose own mitochondria are faulty.

  4. mist permalink
    June 28, 2013 12:47 pm

    As an adult with Mitochondrial Cytopathy I am cheering along with my family. Yes I would have chosen this technique if it had been available rather than see our daughter doubly incontinent, blind, rigid through spasticity lying in a bed in a nursing home 24/7 with early onset dementia.

    The family also know that she will have passed genetic mutation onto her child.

    Mito. diseases do not always present in their full blown form at birth but can materialise at any time during your lifespan and it has no treatment, disease modification etc just the certainty of what will happen.

    If our Doctors can spare a family the pain and anguish for another family such as ours then I will give thanks

  5. Dave permalink
    June 28, 2013 2:16 pm

    GO- so if a child has two biological mothers, which one is ‘real?’ The one with the fault or the one without?

    ‘both’

    Isn’t there any small chance that women with this genetic fault can naturally have a non-disabled child?

    Yes

    Don’t they, like everyone else, deserve the joy that might come if they take that chance and their child is born without a disability?

    Yes, of course they do. This treatment however focuses on children who will be born with disabilities. I think you’re too emotionally involved to have a sensible opinion on this, so for that reason, I’m out.

  6. Chris permalink
    June 28, 2013 5:27 pm

    Obviously we need to be sure that the procedure is safe, but if it works this could prevent a lot of suffering. I think it’s inevitable that eventually it will be common to prevent inherited disabilities in this way. Ultimately it’s something most parents would want.

    I don’t think it implies in any way that the lives of disabled people are worth less than those of the non-disabled.

  7. lyder permalink
    July 5, 2013 10:42 pm

    I take offence on many levels at this. On one level, the sheer stupidity at this tabloid headline is sickening.

    Second, as an example, my dad was born ‘healthy’. His smoking means he is now in a wheelchair – DISABLED, NOT BORN THAT WAY. STOP reducing complex, difficult subjects to stupid simplistic ‘either/or’ answers. The world does NOT run that way, and people like YOU are responsible for DUMBING us, and the level of debate, all DOWN.

    SHAME ON YOU AND YOUR SH*TTY ‘journalism’. THIS is precisely how scum like UKIP get a foothold in debate. ‘Cos IDIOTS come along with IDIOTIC, ‘simple’ answers. All leads to stupidity, racism, and the HATRED we have seen towards the disabled from the Tories and others..

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